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i don't know where to turn

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Old 04-15-2007, 09:41 PM   #1
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Join Date: Mar 2007
Location: united states
Posts: 177
Staar80 HB User
Unhappy i don't know where to turn

i don't know where to look for help. i have been to 7 dr.s and no one is helping me, i know something is wrong. please if anything sounds familiar, let me know.

it all started in AUGUST 8 months ago:

-i developed these red pimple sized bumps on uvula and soft palate. they were followed with smalled bumps all over the palate.
-low grade fevers started
-weight loss
-very sore throat and mouth. i was DX phanyngitis 2 times, the pain never went away with antibiotics.

-it all continued and got worse
-back to DR, more antibiotics, pain never went away, not did the growths.
-glands started to swell

-decided to get a new DR, because this guy was just telling me these viral things tend to hang on.
-saw ENT, in our tiny little backwoods town-he said HIV can do this to your mouth.
-tested negative at 3 months since last unprotected experience.
-glands still
-he also said he thought it was STD
-went to gynecologist, tested neg. for all STD's. she sent me to big city hospital.
-my face, breasts and arms turned beat red for weeks.
-low grade fevers continued.
-night sweats

-fevers still
-strep throat
-aches and pain
-i felt like there was poison coarsing through my veins, it was an effort just to walk my kids in school
-new ENT biopsied my mouth, and it came back as hyperplastic squamous mucosa-he had no idea what caused it, but that it was benign, for now.
-burning on tongue
-night sweats

-more fevers.
-swollen glands still
- hit a 39lb weight loss in 3 months.
-started to inprove a little
-mouth problems never improved

-again neg for HIV, ENT said that is not the problem
-tonsillectomy and adenoidectomy
-oral thrush
-started to gain weight back

-everything listed above, no changes

- again conclusively HIV negative-ID confirmed this with viral load testing. 8 months. she said definitey not.

-back to square one. i do not feel right, i have had low(just barely) RBC, HIgh, then low WBC. HIC MPV? what ever that is?

-8 months lkater still swollen glands
-my chest is still red w/ raised bumps.
-still having fevers?

i also tested neg. for auto-immune, butstill have appt. w.rhumatologist and dermatologist

also 4 yrs ago i had granuloma annulare on legs

someone please help

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Old 04-15-2007, 10:44 PM   #2
Karen W.
Join Date: Apr 2005
Posts: 391
Karen W. HB User
Re: i don't know where to turn

You need to see an infectious disease Doctor, they can figure out just about anything. My son was deathly ill in the hospital, after about a week, he was getting worse and was put into ICU. They called an iinfectious disease Doctor in because they were unsure what his illness was, three days later, we found out he had endocarditis, which was an infection in his heart, if it would have gone untreated he would have died. The infectious disease doctor figured all that out, they are good, he saved my son's life. I would see one real soon.
Keep us posted, Karen W.

Old 04-16-2007, 05:31 AM   #3
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Join Date: Mar 2007
Location: united states
Posts: 177
Staar80 HB User
Re: i don't know where to turn

I did see one about a month ago. she did more "in-depth" HIV testing-viral load which was <50ml-she says that that is as low as the test can show(it doesn't go to zero) and there is no HIV virus in my blood.

She sais she also felt that my problems were not caused by an infection-due to those results, and blood work in general, nothing was really out of the ordinary. she said the auto-immune tests looked OK, but that may still be a concern, i am waiting, impatiently, for the rhuematology appointment.

So, she tells me i am not seeing the right type of specialist. this has been going on almost 9 months now-----WHY HASN'T ANY DOCTOR BEEN SEEING ANYTHING???? I AM SO SCARED.

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